Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

[frozenborderline]

@debored13 unfortunately, i am absolutely sure. the insurance people get while traveling to the USA would not cover pre-existing conditions. there are some that might cover acute-onset of the pre-existing condition but that's it.

C0 - T1 fusion is done mainly for people with RA who have a lot of pain or with people with Down's Syndrome and such. So there must be other doctors doing, right?

The only place I can think of where there is expertise and its cheap is India. However, we were going to go there once for my mom's laminectomy and a bunch of Indian relatives called us and told us not to go, that she would end up dying in the hospital lol. They all said when you go into the hospital there, you dont come out! This is a popular belief there but I dont buy it. Some of the doctors there have been trained in the USA.

Anyway, I am getting carried away again lol

if it doesn’t cover pre existing conditions, Does that mean you would’ve been fine if you got the insurance before the diagnosis? Either way seems contestable.

I’m afraid that nobody on this board is going to encourage or validate your idea of looking for a cheaper surgery. While your position is unfortunate , it’s still a bad idea and I doubt that anybody is going to encourage it. It’s probably a waste of money and time to try and find cheap neurosurgery.

 

[frozenborderline]

You’re better off with no treatment than a botched neurosurgery. You want to gamble with your life, go ahead. There are already intense risks w this procedure even when you have the top neurosurgeons in the world.

 

[roller]

seems to me as if no many ppl are encouraging her to do that at all, whatever surgeon...

yep, rant: i wouldnt have that surgery if they gave me the money...

does this procedure come with some (official) sort of disability status, since (i imagine it does) may restrict the physical movements...
eg does it have (insurance) restrictions when driving a car or so?

 

[Daffodil]

if it doesn’t cover pre existing conditions, Does that mean you would’ve been fine if you got the insurance before the diagnosis? Either way seems contestable.

I’m afraid that nobody on this board is going to encourage or validate your idea of looking for a cheaper surgery. While your position is unfortunate , it’s still a bad idea and I doubt that anybody is going to encourage it. It’s probably a waste of money and time to try and find cheap neurosurgery.

i still dont think travel insurance would cover it because it isnt some kind of emergecy..i am sure they have strict rules and require all kinds of documentation.

yea i probably wont be able to move my neck after. ever. that is a big deal.

whats weird is, the radiologist who read my MRI scans saw nothing but a few herniated discs. nothing abnormal with the structures of the craniocervical junction. and this is a place that does MRI's for Henderson patients.

i am so tired of suffering. seeing doctors one after the other, getting tests, spending money i dont have, and still ending up where i started. its been almost 27 yrs. i need more evidence that my brain stem is really being compressed.

i am very frustrated that i cannot pose questions to the BTM group. We are supposed to help eachother:-/

@debored13 thanks a lot for the info...you gave me a lot to think about

 

[Daffodil]

seems to me as if no many ppl are encouraging her to do that at all, whatever surgeon...

yep, rant: i wouldnt have that surgery if they gave me the money...

does this procedure come with some (official) sort of disability status, since (i imagine it does) may restrict the physical movements...
eg does it have (insurance) restrictions when driving a car or so?

the admin person told me their patients live pretty normal lives but have to be careful when they drive...maybe they have to move their bodies more to see whats going on either side or something....not sure.

 

[frozenborderline]

I’m not saying you will be wrong about the insurance but I am saying that I get the sense you haven’t looked into it enough to be 100% sure. If there’s even a tiny chance , way better idea than spending your time trying to find quacks who will do cheap surgeries on you.

 

[rel8ted]

However, we were going to go there once for my mom's laminectomy and a bunch of Indian relatives called us and told us not to go, that she would end up dying in the hospital lol. They all said when you go into the hospital there, you dont come out! This is a popular belief there but I dont buy it

There was a case last year sometime where someone went to Mexico for elective surger and ended up dying from complications. No surgery is without risk. You have to decide if the risk outweighs the benefit in your specific situation.

 

[rel8ted]

You’re better off with no treatment than a botched neurosurgery. You want to gamble with your life, go ahead. There are already intense risks w this procedure even when you have the top neurosurgeons in the world.

That is what you and I have already said several times here. Beating a dead horse, I am afraid.

Each person must assess the risk of his or her own unique situation and act accordingly. If that means taking a chance on discount neurosurgery, then I hope for the best results.

 

[StarChild56]

@Daffodil - I understand how overwhelmed you must feel and I'm sorry for all that you are going through. Sending you healing vibes/thoughts/prayers.

One other thought, if it were me I would also send my MRI for a 2nd opinion (not that I do not trust the results you received just because it is such a huge diagnosis) - I am partial to Dr. Bolognese so I'd probably send it there but to any of the 4? neurosurgeons literate in CCI/AAI.

My very best wishes for you.

 

[rel8ted]

@Daffodil - I understand how overwhelmed you must feel and I'm sorry for all that you are going through. Sending you healing vibes/thoughts/prayers.

One other thought, if it were me I would also send my MRI for a 2nd opinion (not that I do not trust the results you received just because it is such a huge diagnosis) - I am partial to Dr. Bolognese so I'd probably send it there but to any of the 4? neurosurgeons literate in CCI/AAI.

My very best wishes for you.

That is a great idea. Dr. B will do a televisit according to his website.

 

[StarChild56]

That is a great idea. Dr. B will do a televisit according to his website.

That is correct, I have one scheduled. If I recall, it is $350.

 

[Daffodil]

That is what you and I have already said several times here. Beating a dead horse, I am afraid.

Each person must assess the risk of his or her own unique situation and act accordingly. If that means taking a chance on discount neurosurgery, then I hope for the best results.

lol you aren't beating a dead horse. I just like to think about all the possibilities and options I have so it makes me feel less overwhelmed. believe me, the 3rd world would be my absolute last option - especially since I am not in agony

@StarChild56 yes. I will certainly do that. I was thinking of seeing Henderson cuz he seems so good ..but its also quite expensive so maybe dr. B would be an easier option.

dr. gilete and the others have kind of a relationship so I don't imagine the others will just tell me nothing is wrong. it was suggested that they might suggest fusion on fewer levels with the idea that I would need re-surgery later on.

regular surgeons wouldn't touch me with a 10 ft poll. the radiologist saw nothing wrong in the brain stem area and I have no pain. there is a doctor here who has some experience with chiari....would he also not be able to see brain stem compression?

I don't know if dr. gilete actually sees the compression or if he is basing his diagnoses on my symptoms and the fact that my neck might be unstable

here the DMX will cost 650! and I think I need 2!!

definitely no money to see KDM this year....

 

[StarChild56]

here the DMX will cost 650! and I think I need 2!!

Would you mind telling me what this DMX is? All I have had to do is get the supine MRI with the specific views. Then my PT which I've almost completed (12 visits) though I want to continue as it is helpful. I have my televisit consult coming up shortly and it seems that then I will have my surgery scheduled.

 

[Gingergrrl]

Would you mind telling me what this DMX is?

I was curious, too. What is DMX? And I am sorry about your current news @Daffodil and how stressful this must be. I would NOT rush into a major decision like this and agree with @StarChild56 re: getting a second opinion from Dr. B (if this is possible).

 

[Daffodil]

@StarChild56 @Gingergrrl a DMX is a digital motion x-ray. sort of like a short movie...so they can see the bones as you move. i believe henderson asks for this as well

i found only 1 place here that has that capability - a chiropractor's office. that means a lot more money, having to go through initial assessment and arguing as to why i dont want to follow his recommendations. it is so exhausting with someone new. even though they mean well, after this long, you just want what you want because you are just so jaded and tired.

this one chiro i contacted was very nice but mentioned AO instrument reduction(?) and said i should try stem cell (prolotherapy?) before surgery. i am sure they will also want to do manual manipulation which i would never do.

anyway, i am a little calmer now, having digested the news, and have ordered a good cervical collar. so we will see...

i also called Dr B but will get DMX first before i think about making an appt...

thanks for reading!
oxo

ps can you imagine ?? C0-T1 fusion?? thats my whole neck! and i was worried they would find nothing hah. be careful what you wish for, as the say

 

[Wayne]

I would also send my MRI for a 2nd opinion (not that I do not trust the results you received just because it is such a huge diagnosis)

This is the approach I would take, as I would want to be absolutely certain surgery was the best option available.

I just like to think about all the possibilities and options I have so it makes me feel less overwhelmed.

That's almost precisely how I feel about big uncertainties that come up for me. I try to collect as much information as possible, so that I can compile it all in my mind in an organized manner (if that's even possible with a CFS brain ). What I essentially try to do then is transfer this "organized data" over to my intuition, so that it can--over time--make the best intuitive decision possible.

Not necessarily foolproof, but I find turning things over to my intuition allows me to relax, and as you said, feel less overwhelmed. Decisions made when a person is calm and relaxed are almost assuredly going to be better ones than those arrived at through a feel of desperation or overwhelmedness. -- All the best to you @Daffodil as you navigate this "tricky" situation. I'm confident you can do it!

 

[Malea]

I haven’t managed to keep up with this thread but from reading on facebook and googling I’m having more and more the impression, that some people who get fused need sooner or later a follow-up surgery because other parts become instabile.

 

[dreampop]

I haven’t managed to keep up with this thread but from reading on facebook and googling I’m having more and more the impression, that some people who get fused need sooner or later a follow-up surgery because other parts become instabile.

That is true.

 

[dreampop]

I have no upper extremity symptoms - no neuropathy, no headaches, nothing but brain fog and ME/CFS. No one will do anything for me locally.

Daffodil, it's important to remember that CCI's et al. relationship to ME/CFS is unclear. It may be that there is a relatinship, but not a linear one. That Rowe case report on stenosis leaves out plenty of people have stenosis, get the surgery and it has no impact on their ME/CFS. That may also be true for CCI.

Thus, if you're having no symptoms of CCI, I'm unsure why you would feel the need to rush through this stuff. Maybe it's just ME/CFS. Take your time and consult the doctors you need to first.

 

[dreampop]

I wonder what % have been dxed with this so far.